RE: Mixed Bag Misc. Assortment of Whatevers

June 8, 2006

Hey, , I've missed you. I'm glad that you've gotten some decent care. When The Old Fart says you don't have sarc, does he offer any other possible causes of your neuropathy, etc? Have you ever had a biopsy for sarc--lungs, lymph nodes in the chest, etc? If so, then he's an Ignorant Old Fart. A positive biopsy means that you DO have sarcoidosis. It may or may not be active; it may or may not be causing all of your health problems. If you haven't had a biopsy positive for sarc, that doesn't mean you don't have it; in that case, a GOOD, COMPETENT doctor relies on a detailed history, thorough exam, possibly lab tests (although as we know, those can be normal even with known sarcoidosis), and the good old-fashioned art of medicine! Back in 2001 when I began to have neurological symptoms (actually they began in 1999 with the hearing loss & first Bell's palsy, but it wasn't recognized), 7 years after my lymph node biopsy was positive for sarc, no one disputed the fact that I had sarc, but my neurologist wouldn't treat me for neurosarc because "all the tests were normal." My family doc at the time flipped through all the test pages & said, Look, these are all normal. There's nothing wrong with you that an hour on the treadmill every day wouldn't cure! That's when I went to Atlanta, Georgia to see Dr. Stern at Emory Univ. He read all the test results, took a very detailed history & jotted down a whole page of notes, did the most thorough physical exam I've ever had, especially on my feet & legs, then relied on his experience (hundreds of NS patients) and his analysis to confirm the NS & need to begin treatment. One interesting thing is that I saw my pulmonologist before going to Atlanta & he said, "You have neurosarc." I told him that all the tests were normal and he said, "I don't care what the tests say; you have neurosarc!" So there are some docs out there who still trust their own skills & knowledge more than technology, but not many.

Well, I don't know that this was any help. Maybe you could print it out & take it to The Old Fart! You'd have to find another doctor, but wouldn't it be worth it to see his face turn red & his eyes bulge out?!? Keep on truckin', .

Ramblin' Rose

Moderator See if you've won, play MSN Search and Win

June 8, 2006

Rose, I guess I should refresh your memory. After I went to Harper Hospital in Detroit for my brother Dale to do bone marrow testing for him, I found out I had lesions or unknown growths there in my lungs from the chest x-rays. I had an Bronchoscopy (scope down inside my lungs) back in October, 2001 about 2 months later. Negative for cancer, but I had some rare bacteria of some kind down in that dungeon called the lungs. Next step to further be a more difinative diagnois is that I had an Mediastinoscopy done outside of my lungs between them and the rib cage. Mediastinal Lymphdenpathy (mispelled?) of Non-castising granulomas junk. This last test mentioned was done in December, 2001. The following month of Janurary, 2002 after having an Ct-scan of my lungs I have a report of diagnois of Sarcoidosis that I written what this report stated before a long time ago. So this is what I always had as a information/data report of

having Sarcoidosis after this Ct-scan in Janurary, 2002. Since then, this pain in my bones, muscles, and periheral neuropathy that I have is all circumstancial that it is from Sarcoidosis as well. Arthritic Blood Profile Test for arthrisis that I had in June, 2002 I believe it took place was negative for arthrisis. Blood tests for Kidney Disease, Vitamin D-12 Defiency, and Diabeetes were all negative that all 3 of these can causes periheral neuropathy that I had done. Neurologist, or that different primary care doctor I had way back in spring, 2002; Dr. told me I don't have cancer, Alcohoic Neuropathy, infections, and my mild disc bulge in my back were ALL not causing this periheral neuropathy as well. See, Sarcoidosis may very well all the long time be causing these other pain areas other than my lungs, but I still don't have difinitive proof of one way or another (in the bones, muscles, & neuropathy). BUT I SHOWED THIS MEDIASTINOSCOPY AND MY FOLLOW UP CT-SCAN OF MY LUNGS TO THAT "OLD FART" PRIMARY CARE DOCTOR AT THE V.A. HEALTH CLINIC THAT STATED DIAGNOIS OF SARCOIDOSIS AT 3 DIFFERENT TIMES. I showed these reports to neurologists & lung doctors at Ann Arbor V.A. Hospital before back in 2002-2003. They believed what those reports stated and view that these doctors that did these tests were trustworthy about this data. The person that did this Mediastinoscopy on my lungs was and if he is still doing this type of work, was and is a SURGEON. This was done at Blodgett Campus, Spectrum Health Hospitals. This hospital and the former Butterworth Hospital merged together to form Spectrum Health Hospitals. These 2 hospitals are part of the 4 private sector hospitals in this metro area. Where I had this Bronchoscopy done was at St. 's Hospital in G.R. I've been so frustrated at times with this

medical care and/or docs with the V.A., that has been a factor in apathy to resolve these matters over the years. "Throw in the Towel Syndrome" is still lingering around in those warped brain cells of mine. Rose wrote: Hey, , I've missed you. I'm glad that you've gotten some decent care. When The Old Fart says you don't have sarc, does he offer any other possible causes of your neuropathy, etc? Have you ever had a biopsy for sarc--lungs,

lymph nodes in the chest, etc? If so, then he's an Ignorant Old Fart. A positive biopsy means that you DO have sarcoidosis. It may or may not be active; it may or may not be causing all of your health problems. If you haven't had a biopsy positive for sarc, that doesn't mean you don't have it; in that case, a GOOD, COMPETENT doctor relies on a detailed history, thorough exam, possibly lab tests (although as we know, those can be normal even with known sarcoidosis), and the good old-fashioned art of medicine! Back in 2001 when I began to have neurological symptoms (actually they began in 1999 with the hearing loss & first Bell's palsy, but it wasn't recognized), 7 years after my lymph node biopsy was positive for sarc, no one disputed the fact that I had sarc, but my neurologist wouldn't treat me for neurosarc because "all the tests were normal." My family doc at the time flipped through all the test pages & said, Look, these are

all normal. There's nothing wrong with you that an hour on the treadmill every day wouldn't cure! That's when I went to Atlanta, Georgia to see Dr. Stern at Emory Univ. He read all the test results, took a very detailed history & jotted down a whole page of notes, did the most thorough physical exam I've ever had, especially on my feet & legs, then relied on his experience (hundreds of NS patients) and his analysis to confirm the NS & need to begin treatment. One interesting thing is that I saw my pulmonologist before going to Atlanta & he said, "You have neurosarc." I told him that all the tests were normal and he said, "I don't care what the tests say; you have neurosarc!" So there are some docs out there who still trust their own skills & knowledge more than technology, but not many. Well, I don't know that this was any help. Maybe you could print it out &

take it to The Old Fart! You'd have to find another doctor, but wouldn't it be worth it to see his face turn red & his eyes bulge out?!? Keep on truckin', . Ramblin' Rose Moderator See if you've won, play MSN Search and Win __________________________________________________

June 8, 2006

Rose, I guess I should refresh your memory. After I went to Harper Hospital in Detroit for my brother Dale to do bone marrow testing for him, I found out I had lesions or unknown growths there in my lungs from the chest x-rays. I had an Bronchoscopy (scope down inside my lungs) back in October, 2001 about 2 months later. Negative for cancer, but I had some rare bacteria of some kind down in that dungeon called the lungs. Next step to further be a more difinative diagnois is that I had an Mediastinoscopy done outside of my lungs between them and the rib cage. Mediastinal Lymphdenpathy (mispelled?) of Non-castising granulomas junk. This last test mentioned was done in December, 2001. The following month of Janurary, 2002 after having an Ct-scan of my lungs I have a report of diagnois of Sarcoidosis that I written what this report stated before a long time ago. So this is what I always had as a information/data report of

having Sarcoidosis after this Ct-scan in Janurary, 2002. Since then, this pain in my bones, muscles, and periheral neuropathy that I have is all circumstancial that it is from Sarcoidosis as well. Arthritic Blood Profile Test for arthrisis that I had in June, 2002 I believe it took place was negative for arthrisis. Blood tests for Kidney Disease, Vitamin D-12 Defiency, and Diabeetes were all negative that all 3 of these can causes periheral neuropathy that I had done. Neurologist, or that different primary care doctor I had way back in spring, 2002; Dr. told me I don't have cancer, Alcohoic Neuropathy, infections, and my mild disc bulge in my back were ALL not causing this periheral neuropathy as well. See, Sarcoidosis may very well all the long time be causing these other pain areas other than my lungs, but I still don't have difinitive proof of one way or another (in the bones, muscles, & neuropathy). BUT I SHOWED THIS MEDIASTINOSCOPY AND MY FOLLOW UP CT-SCAN OF MY LUNGS TO THAT "OLD FART" PRIMARY CARE DOCTOR AT THE V.A. HEALTH CLINIC THAT STATED DIAGNOIS OF SARCOIDOSIS AT 3 DIFFERENT TIMES. I showed these reports to neurologists & lung doctors at Ann Arbor V.A. Hospital before back in 2002-2003. They believed what those reports stated and view that these doctors that did these tests were trustworthy about this data. The person that did this Mediastinoscopy on my lungs was and if he is still doing this type of work, was and is a SURGEON. This was done at Blodgett Campus, Spectrum Health Hospitals. This hospital and the former Butterworth Hospital merged together to form Spectrum Health Hospitals. These 2 hospitals are part of the 4 private sector hospitals in this metro area. Where I had this Bronchoscopy done was at St. 's Hospital in G.R. I've been so frustrated at times with this

medical care and/or docs with the V.A., that has been a factor in apathy to resolve these matters over the years. "Throw in the Towel Syndrome" is still lingering around in those warped brain cells of mine. Rose wrote: Hey, , I've missed you. I'm glad that you've gotten some decent care. When The Old Fart says you don't have sarc, does he offer any other possible causes of your neuropathy, etc? Have you ever had a biopsy for sarc--lungs,

lymph nodes in the chest, etc? If so, then he's an Ignorant Old Fart. A positive biopsy means that you DO have sarcoidosis. It may or may not be active; it may or may not be causing all of your health problems. If you haven't had a biopsy positive for sarc, that doesn't mean you don't have it; in that case, a GOOD, COMPETENT doctor relies on a detailed history, thorough exam, possibly lab tests (although as we know, those can be normal even with known sarcoidosis), and the good old-fashioned art of medicine! Back in 2001 when I began to have neurological symptoms (actually they began in 1999 with the hearing loss & first Bell's palsy, but it wasn't recognized), 7 years after my lymph node biopsy was positive for sarc, no one disputed the fact that I had sarc, but my neurologist wouldn't treat me for neurosarc because "all the tests were normal." My family doc at the time flipped through all the test pages & said, Look, these are

all normal. There's nothing wrong with you that an hour on the treadmill every day wouldn't cure! That's when I went to Atlanta, Georgia to see Dr. Stern at Emory Univ. He read all the test results, took a very detailed history & jotted down a whole page of notes, did the most thorough physical exam I've ever had, especially on my feet & legs, then relied on his experience (hundreds of NS patients) and his analysis to confirm the NS & need to begin treatment. One interesting thing is that I saw my pulmonologist before going to Atlanta & he said, "You have neurosarc." I told him that all the tests were normal and he said, "I don't care what the tests say; you have neurosarc!" So there are some docs out there who still trust their own skills & knowledge more than technology, but not many. Well, I don't know that this was any help. Maybe you could print it out &

take it to The Old Fart! You'd have to find another doctor, but wouldn't it be worth it to see his face turn red & his eyes bulge out?!? Keep on truckin', . Ramblin' Rose Moderator See if you've won, play MSN Search and Win __________________________________________________

June 8, 2006

Rose, I guess I should refresh your memory. After I went to Harper Hospital in Detroit for my brother Dale to do bone marrow testing for him, I found out I had lesions or unknown growths there in my lungs from the chest x-rays. I had an Bronchoscopy (scope down inside my lungs) back in October, 2001 about 2 months later. Negative for cancer, but I had some rare bacteria of some kind down in that dungeon called the lungs. Next step to further be a more difinative diagnois is that I had an Mediastinoscopy done outside of my lungs between them and the rib cage. Mediastinal Lymphdenpathy (mispelled?) of Non-castising granulomas junk. This last test mentioned was done in December, 2001. The following month of Janurary, 2002 after having an Ct-scan of my lungs I have a report of diagnois of Sarcoidosis that I written what this report stated before a long time ago. So this is what I always had as a information/data report of

having Sarcoidosis after this Ct-scan in Janurary, 2002. Since then, this pain in my bones, muscles, and periheral neuropathy that I have is all circumstancial that it is from Sarcoidosis as well. Arthritic Blood Profile Test for arthrisis that I had in June, 2002 I believe it took place was negative for arthrisis. Blood tests for Kidney Disease, Vitamin D-12 Defiency, and Diabeetes were all negative that all 3 of these can causes periheral neuropathy that I had done. Neurologist, or that different primary care doctor I had way back in spring, 2002; Dr. told me I don't have cancer, Alcohoic Neuropathy, infections, and my mild disc bulge in my back were ALL not causing this periheral neuropathy as well. See, Sarcoidosis may very well all the long time be causing these other pain areas other than my lungs, but I still don't have difinitive proof of one way or another (in the bones, muscles, & neuropathy). BUT I SHOWED THIS MEDIASTINOSCOPY AND MY FOLLOW UP CT-SCAN OF MY LUNGS TO THAT "OLD FART" PRIMARY CARE DOCTOR AT THE V.A. HEALTH CLINIC THAT STATED DIAGNOIS OF SARCOIDOSIS AT 3 DIFFERENT TIMES. I showed these reports to neurologists & lung doctors at Ann Arbor V.A. Hospital before back in 2002-2003. They believed what those reports stated and view that these doctors that did these tests were trustworthy about this data. The person that did this Mediastinoscopy on my lungs was and if he is still doing this type of work, was and is a SURGEON. This was done at Blodgett Campus, Spectrum Health Hospitals. This hospital and the former Butterworth Hospital merged together to form Spectrum Health Hospitals. These 2 hospitals are part of the 4 private sector hospitals in this metro area. Where I had this Bronchoscopy done was at St. 's Hospital in G.R. I've been so frustrated at times with this

medical care and/or docs with the V.A., that has been a factor in apathy to resolve these matters over the years. "Throw in the Towel Syndrome" is still lingering around in those warped brain cells of mine. Rose wrote: Hey, , I've missed you. I'm glad that you've gotten some decent care. When The Old Fart says you don't have sarc, does he offer any other possible causes of your neuropathy, etc? Have you ever had a biopsy for sarc--lungs,

lymph nodes in the chest, etc? If so, then he's an Ignorant Old Fart. A positive biopsy means that you DO have sarcoidosis. It may or may not be active; it may or may not be causing all of your health problems. If you haven't had a biopsy positive for sarc, that doesn't mean you don't have it; in that case, a GOOD, COMPETENT doctor relies on a detailed history, thorough exam, possibly lab tests (although as we know, those can be normal even with known sarcoidosis), and the good old-fashioned art of medicine! Back in 2001 when I began to have neurological symptoms (actually they began in 1999 with the hearing loss & first Bell's palsy, but it wasn't recognized), 7 years after my lymph node biopsy was positive for sarc, no one disputed the fact that I had sarc, but my neurologist wouldn't treat me for neurosarc because "all the tests were normal." My family doc at the time flipped through all the test pages & said, Look, these are

all normal. There's nothing wrong with you that an hour on the treadmill every day wouldn't cure! That's when I went to Atlanta, Georgia to see Dr. Stern at Emory Univ. He read all the test results, took a very detailed history & jotted down a whole page of notes, did the most thorough physical exam I've ever had, especially on my feet & legs, then relied on his experience (hundreds of NS patients) and his analysis to confirm the NS & need to begin treatment. One interesting thing is that I saw my pulmonologist before going to Atlanta & he said, "You have neurosarc." I told him that all the tests were normal and he said, "I don't care what the tests say; you have neurosarc!" So there are some docs out there who still trust their own skills & knowledge more than technology, but not many. Well, I don't know that this was any help. Maybe you could print it out &

take it to The Old Fart! You'd have to find another doctor, but wouldn't it be worth it to see his face turn red & his eyes bulge out?!? Keep on truckin', . Ramblin' Rose Moderator See if you've won, play MSN Search and Win __________________________________________________

June 8, 2006

, thanks for the review. One of the things we are going to do

once the chat rooms are up & running smoothly is to have a website

for members to publish their sarc stories, voluntarily of course.

That way, when I can't remember which has the heart problem or

whatever, I can go there. Also new members can read some of our

stories there so that we don't have to repeat them so many times, as

that can be very tiring & time-consuming. And for you, with your

computer time limited, that would really be helpful. I'm working on

a form that we can use, or just tell it as you did.

Anyway, does this Old Fart think that sarc can just disappear? You

are smart to have these reports to show them. That's why we urge

everyone to get copies of all their tests, biopsies, etc. I also had

a biopsy by mediastinoscopy, then 8 years later by lung biopsy. If

you are already known to have sarcoidosis, then develop neurological

symptoms that can't be explained by anything else, you are presumed

to have neurosarc. I think that some of these bozos took the wrong

exit off the freeway & wound up at medical school instead of clown

college.

It's frustrating for anyone, but when you are stuck in the VA system,

it's even worse. My brother in Houston has been going through this

for at least 2 years, with poor circulation, chronic blood clots in

his legs, tremors. Different docs at the VA tell him different

things. He's almost 64. I wish I could go down there & go to an

appt with him. Well, I don't want to use up all your computer time,

so it's over & out for now. Rose

> Hey, , I've missed you. I'm glad that you've

gotten some decent care. When The Old Fart says you don't have sarc,

does he offer any other possible causes of your neuropathy, etc?

Have you ever had a biopsy for sarc--lungs, lymph nodes in the chest,

etc? If so, then he's an Ignorant Old Fart. A positive biopsy means

that you DO have sarcoidosis. It may or may not be active; it may or

may not be causing all of your health problems. If you haven't had a

biopsy positive for sarc, that doesn't mean you don't have it; in

that case, a GOOD, COMPETENT doctor relies on a detailed history,

thorough exam, possibly lab tests (although as we know, those can be

normal even with known sarcoidosis), and the good old-fashioned art

of medicine! Back in 2001 when I began to have neurological symptoms

(actually they began in 1999 with the hearing loss & first Bell's

palsy, but it wasn't recognized), 7 years after my lymph node biopsy

was positive for sarc, no one

> disputed the fact that I had sarc, but my neurologist wouldn't

treat me for neurosarc because " all the tests were normal. " My

family doc at the time flipped through all the test pages & said,

Look, these are all normal. There's nothing wrong with you that an

hour on the treadmill every day wouldn't cure! That's when I went to

Atlanta, Georgia to see Dr. Stern at Emory Univ. He read all the

test results, took a very detailed history & jotted down a whole page

of notes, did the most thorough physical exam I've ever had,

especially on my feet & legs, then relied on his experience (hundreds

of NS patients) and his analysis to confirm the NS & need to begin

treatment. One interesting thing is that I saw my pulmonologist

before going to Atlanta & he said, " You have neurosarc. " I told him

that all the tests were normal and he said, " I don't care what the

tests say; you have neurosarc! " So there are some docs out there who

still trust their own skills & knowledge more than

> technology, but not many.

> Well, I don't know that this was any help. Maybe you could print

it out & take it to The Old Fart! You'd have to find another doctor,

but wouldn't it be worth it to see his face turn red & his eyes bulge

out?!? Keep on truckin', .

> Ramblin' Rose

> Moderator

>

> ---------------------------------

> See if you've won, play MSN Search and Win

>

> __________________________________________________

>

June 8, 2006

...forgive me for jumping in .... but we all go through

the " throwing in the towel syndrome " I did that all through Dec and

January. If I had not had Iritis so badly in my eyes no one would

still be listening now. Hang in there and keep being pushing the

docs...It is the squeeky wheel that gets the attention! I only had

military doctors for almost 30 year and I know there are fine ones

out there - one of them saved my life by doing a biopsy on a lump

that others probably would have just watched. I pray you will find

the good one in the batch soon!

Ruth

>

> Hello,

>

> Tracie, I wrote before apolizing for writing stuff awhile back.

I know shouldn't be that way, but that " old throw in the towel

sydrome " still hangs around more or less all the time.

> I did one of those things like 6 weeks ago and went down to Ann

Arbor V.A. to see the lung doc. I did this today and had a lung

function test of my semi-annual visits to there. This was the best

one I had of all of them since of having this diagnois of

Sarcoidosis. This very well not like prexisting of having this

diagnois, but best since then. I asked this lung doc if I still have

Sarcoidosis. He said that's uncertain. It very well is NOT ACTIVE

there in my lungs however. I don't disagree with anything what he

said. It is this area of pain in my legs & knees that has and is my

pressing concern. I'll give my " grading " of these V.A. docs' at the

end of this e-mail.

>

> My " OLD FART " primary care doctor, Dr. Vande Haar, told me last

Wednesday (May 31st) that I DON'T HAVE SARCOIDOSIS. Well, well, if I

don't have this, then what is it??????? Arthritic Blood Profile Test

for Arthrisis was negative in May, 2002. Testing to see if I had

Kidney Disease, Vitamin D-12 Defiency, and Diabeetes that causing

this nerve damage of mine were all negative in summer 2002. I don't

have cancer, infections, or an alcohoic that would cause Alcohoic

Neuropathy that would cause this nerve damage as well. This " OLD

FART " doc of mine very well has thought that BECAUSE I'am not having

seizures, strokes, heart attacks, organ damage, etc that I DON'T

have Sarcoidosis. He agreed with that rhemy doc and not having an

MRI on my legs & knees WHERE all said and done 90 % of my pain is

occuring. He said that this rhemy doc got his medical training at

the University of Detroit and somewhere else. BIG DEAL!!!!!!!!!

Right now this pain in my legs & knees is about #4

> compared to last year when it was up to #8 level on a scale of #0

to #10. Summer is just about starting however. I'am sure my pain in

this area will increase.

>

> My grading of these docs':

>

> Pulmonary (lung) --- A

> Eye ---- A

> Neurology --- B

> Rheumology --- D-

> Primary Care Doc --- D+

>

> P.s. You y'all want me to leave this group???

>

> __________________________________________________

>

June 8, 2006